How we began

We started Lose the Label in 2013 as a direct consequence of the experiences of Michelle Clark, the founder, as her daughter Mara started her new life. During the course of everyday events with Mara, Michelle confronted a variety of reactions from family, friends, the public and professionals, which were founded in myth stereotypes. In particular, Michelle discovered, there was a special language for her daughter, a way of labelling the baby, of pre-judgement and of diminished expectations.

Finding the language used could be limiting to her daughter’s development and future prospects, Michelle set about researching how society – publicly and professionally – talks about people with Down syndrome, how this language impacts the lives of individuals with the condition, and why society continues to label people in this way.

Michelle quickly discovered that both the language used, and the underlying perceptions that society has of life with Down syndrome, are formed by the continued availability of outdated information. In both professional and public circles, views are conditioned by an inherited language that defines individuals solely by their diagnosis.

Over the past 40 years there have been leaps in society’s development and understanding of the potential of those with Down syndrome and there are now many more inclusive opportunities for individuals with the condition. However, the continued use of language that fuels a negative and outdated perception of life with Down syndrome has held back public awareness and continues to limit the futures of individuals with the condition.

There are progressive organisations supporting individuals with Down syndrome and their families throughout their lives. However few directly address the impact of language and terms of reference on every choice made by the individual, their families and communities, from the prenatal assessment through to the key life decisions of adulthood. No-one provides more than a few examples of ‘What not to say’ alongside ‘What to say’ when discussing person first language.

Recognising that simply recommending ‘preferred language’ isn’t enough to catalyze a change in attitudes, and that altering the way we say and think about things requires effort and the motivation, Michelle created a social media page, simply posting on it an image of Mara with a message that simplifies the issue, and reminds us that an individual is not a diagnosis, but a unique character, and should be treated, and referred to as such.

This message – “Lose the Label” – is our call to action. It informs our images and messaging, clearly stating what it is we’re asking you to consider, and to do. It speaks for itself.

Within minutes of sharing this image, the campaign was attracting interest from around the globe. It now features individuals with Down syndrome from all corners of the world, confirming this is a change long overdue and one that will benefit individuals, families and communities in every part of the world.